Yesterday was kind of a mixed bag. When I got there I had to go to the main desk and register that I had arrived. Because of my problems with the RN last time for the lab work, I told the woman at the desk that I did not want the same RN I had last infusion. She asked me who it was and why. I didn't remember her name but described her and she knew who it was. I told her that the main problem arose because she would not listen to me. I know ME better than anyone else and when I say I have to be inclined for access to the port, it just makes everything go smoothly. Instead, she 'knew' better than I and, therefore, the procedure took 1 1/4 HOURS!!!!! The registrar said Joanna wasn't there today (they rotate) but she would note it on my chart. I then went out in the hall to sit and wait. Within just a few minutes, Maureen called my name. From the time I got up, walked into the cubicle, explained the procedure for being inclined, she said, "Yes, I have accessed you before." She inclined me - got the access, drew the blood she needed, capped the tube for infusion. I was back sitting in the hall no more than 5 minutes later!!! Hurrah. I told her she had lowered my BP by 10 points! I also asked her how long she had been an RN (5+ years) and where she had trained. She said CT! I asked where and she said Fairfield. I told her I had lived in Newtown for 20 years and that my best friend was living in Fairfield. We had a good laugh.
Everything is good from the blood work and physical exam. However I had some difficulties with the infusion. I had told the Dr. that I had again had the restless leg syndrome with the previous infusion so he ordered Ativan. It was given through the port, immediately followed by the Benedryl. Unfortunately, I was both groggy and had RLS and just couldn't relax. I would start to drift off but then would be restless and just couldn't relax. I finally got another 1/2 mg of Ativan but that just didn't take care of it. I finally asked if I could go lie down on a bed, instead of reclining in a chair. That helped a little and I did doze but couldn't quiet the RLS. That, unfortunately lasted about 2/3 of the infusion. I finally was able to have the lights on and could sit up without discomfort. Dave said I was a lot more fun!!! I walked like a drunken sailor!
I will gladly suffer those side effects if that's the worst I have during the infusion, but I do think I need the 1 mg of Ativan before the benedryl and time in between those two drugs. Because they feed all the infusion chemo through saline, I spent last night peeing every 1 1/2 - 2 hours all night! So I didn't get a particularly good night's sleep when I was really exhausted. Tonight will be better, I am sure.
The fact that I have only ONE MORE TO GO encourages me to finish it out. I had already decided that unless cancer showed up in one of the test or exams, I would finish the chemo regime regardless, this was an easy decision to make. In fact, if cancer showed up while I am on this trial, I will be booted out of it. Obviously, it would not have been working.
I sort of expect the same fatigue and lethargy to become the routine this next week. I will just rest and sleep when I need to. Not a problem.
I also screwed up the courage to ask the Dr. of the four from this area, how many have been able to continue the trial. He said I was the only one. The other three came into the trial with cancer present and it progressed, which means the chemo was not working. With that, they are automatically out of the trial, unfortunately. When he comes in to have the consultation and do the physical exam, he is much more personable with me. Now I know why. I guess I am his start patient. I am sorry the other three have had to withdraw and I wish them well, although I don't expect they are having an easy time of it.
I feel fine today. Last time it was Sunday before I felt the side effects. Regarding the RA, something is working very well. With the 1st infusion, I was free of RA symptoms for about 5 days; 2nd fusion, about 10 days; 3rd infusion, 2 full weeks; 4th infusion the full three weeks. I have no symptoms today so that is continuing. I asked them if they knew which drug it was that was doing the magic. They don't know but are anxious to follow me. We're all hoping it is the Avastin, which is the biologic I will continue after the 6th infusion. I am the only one who will initially know if that is the one working. Keep your fingers crossed.
That's it for today. Thanks for your terrifically good thoughts.
Saturday, November 12, 2011
Sunday, November 6, 2011
6 November 2011
The last infusion (#4) was interesting - by the time we left the hospital, my RA symptoms had totally disappeared. I don't know which of the drugs is doing the magic. I hope it is the Avastin (Bevacizamab) because that will be the maintenance drug after the 6th infusion, which should be December 2. Today is day #16 and so far the RA is not as bad as it was this day with cycle #3. I suppose that is part of the cumulative factor.
I did experience one more side effect with this last infusion. Beginning Monday after the infusion, I was very fatigued and had absolutely no energy. That existed all week, through Sunday. When I woke up Monday morning, both symptoms were completely gone and I have not been unduly tired and have had plenty of energy. I suppose, as this is cumulative, this will be the pattern for the next two infusions. I don't fight it - simply go with it - take naps and don't try to do too much that week.
The other side effect that bothers me is the sinus congestion. There are times when I have to choose between chewing or breathing. It isn't fun. At the last Dr.'s visit (the day of infusion) I mentioned this to the Dr. and was told I could take Sudafed PE, Sudafed or Allegra. When I talked with my oncology nurse on Friday, she said I should NOT be taking any of those because they raise my blood pressure and the Avastin raises it. If I am over the line, they can't give me the chemo, so I am following her advise and taking Advil Congestion Relief. That does seem to be working and I can take it every four hours, if necessary. The important factor is that is doesn't raise my BP. So, I take one before going to bed and have one available if I wake up congested in the middle of the night. It is a little frustrating that the Dr. tells me one thing, the oncology nurse another. I do wish they would communicate together and present a united front.
When I had my labs done last Thursday, I was still on Sudafed (Sudafed PE didn't work very well), so I think that accounts for my BP being a little high this week - more like 146/84. I will find out this next week.
The side effect I noticed last cycle - blurred vision - is still with me. If I am on the computer for too long, or work y needlework too intensely, or even read, my eyes get so tired and sometimes that gives me a headache behind my eyes. When I notice that happening, I stop whatever I am doing and look out the window as far into the distance as I can to relax my eyes.
We are in a winter storm pattern - two a week. However, it does look like this next one will miss us, going south of us. If there is forecast of snow for the day we go to Aurora for the infusion, we will opt to go down the day before and stay at the hotel across the street. That way, my infusion will not be delayed. I am so looking forward to #6 being done, although I have tolerated the chemo much better than I had any reason to expect.
My hair, by the way, is coming in thick and curly. It is easy to style and I really think I will keep it shorter than I did before surgery. It is just so easy to take care of and all my friends say they really like it short.
I did experience one more side effect with this last infusion. Beginning Monday after the infusion, I was very fatigued and had absolutely no energy. That existed all week, through Sunday. When I woke up Monday morning, both symptoms were completely gone and I have not been unduly tired and have had plenty of energy. I suppose, as this is cumulative, this will be the pattern for the next two infusions. I don't fight it - simply go with it - take naps and don't try to do too much that week.
The other side effect that bothers me is the sinus congestion. There are times when I have to choose between chewing or breathing. It isn't fun. At the last Dr.'s visit (the day of infusion) I mentioned this to the Dr. and was told I could take Sudafed PE, Sudafed or Allegra. When I talked with my oncology nurse on Friday, she said I should NOT be taking any of those because they raise my blood pressure and the Avastin raises it. If I am over the line, they can't give me the chemo, so I am following her advise and taking Advil Congestion Relief. That does seem to be working and I can take it every four hours, if necessary. The important factor is that is doesn't raise my BP. So, I take one before going to bed and have one available if I wake up congested in the middle of the night. It is a little frustrating that the Dr. tells me one thing, the oncology nurse another. I do wish they would communicate together and present a united front.
When I had my labs done last Thursday, I was still on Sudafed (Sudafed PE didn't work very well), so I think that accounts for my BP being a little high this week - more like 146/84. I will find out this next week.
The side effect I noticed last cycle - blurred vision - is still with me. If I am on the computer for too long, or work y needlework too intensely, or even read, my eyes get so tired and sometimes that gives me a headache behind my eyes. When I notice that happening, I stop whatever I am doing and look out the window as far into the distance as I can to relax my eyes.
We are in a winter storm pattern - two a week. However, it does look like this next one will miss us, going south of us. If there is forecast of snow for the day we go to Aurora for the infusion, we will opt to go down the day before and stay at the hotel across the street. That way, my infusion will not be delayed. I am so looking forward to #6 being done, although I have tolerated the chemo much better than I had any reason to expect.
My hair, by the way, is coming in thick and curly. It is easy to style and I really think I will keep it shorter than I did before surgery. It is just so easy to take care of and all my friends say they really like it short.
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